Tagged: diabetes

Stop.

It’s no surprise to those who know me or read this blog that I have fingers in a lot of (no carb!) pies these days. What started with this blog has blossomed into two non-profits, The Diabetes UnConference, policy advocacy, reviewing funding grant applications as a peer reviewer nationally and internationally, and attending/speaking at health conferences.

stop-sign-1420987-639x639This past month, I didn’t stop. Coming off the high of The Diabetes UnConference in Las Vegas, there was a short vacation with family (although John says that I really didn’t act like I was on vacation), then the launch of the DPAC #suspendbidding campaign and in the midst of it all, travel to the CWD Friends For Life conference in Falls Church, where Bennet and I unleashed the DPAC Diabetes Advocacy Boot Camp with some phenomenal guest speakers and calls to action. All good things. All important things.

Yes, I slept. Yes, I ate. Yes, I took time for myself. (Although in retrospect, reading a grant proposal with a highlighter in my hand while I got my hair cut doesn’t qualify as time for myself.) I was gearing up for a weekend conference that I not only wanted to attend, but had the privilege of helping to design as an advisor. On Thursday, I headed to Chicago, raring to go.

Off.

And I slept on the plane. Normally, once the flight attendant gives the signal that it’s OK to do so, I’m like a thoroughbred out of the starting gate, whipping the laptop out and working on projects and ideas while others watch cat videos. This time, while waiting to take off, I simply shut my eyes to meditate for a few minutes and the next thing I hear is the announcement that we were landing. That should have been my first clue.

Chit-chatting with the driver on the way to the hotel, I began to feel “off.” That “off” that you can’t really put your finger on, because you’ve done the mental checklist in your head:

  • Low blood sugar? Nope.
  • High blood sugar? Nope.
  • Food in your belly? Yep.
  • Could you be “real people” sick? Nope.
  • Hydrated? Yep.
  • Rested? Am I ever? But I just had a nap!
  • Is Venus in retrograde while you’re wearing itchy socks? Nope.

I assumed that it was a combination of getting off a plane and getting up early to get on that plane, but there was the little voice in the back of my head that said…  “Something else is going on.”

stop-1473017-639x772I checked into the hotel, intending to drop my bags and take a walk. That all changed when I opened the door to my room and a wave of exhaustion swept over me. Not a normal wave; a tsunami that scared me enough to text John and say: “I don’t know what’s wrong with me. What I am feeling isn’t normal. This is not normal exhaustion.” My smart husband told me to go eat lunch, then head upstairs and mediate for a few minutes.

A healthy lunch eaten and that meditation turned into a two and a half hour nap. I still felt tired. The next day, another long nap and still exhausted. When I asked friends why I might be like this (and saying that my blood sugars were in range and I wasn’t sick), the responses ranged from: “Could you be pregnant?” (Nopeity-nope-nope. The Kid will be an only child.) to “Have you checked ketones?” (Which was a smart idea and I didn’t have any.)

energy-1-1176465-640x512Everyone Should Know Rhonda.

And then I met Rhonda Waters. She’s part of the Johnson & Johnson Human Performance Institute, specializing in energy management. Not the kind of energy that keeps the physical lights on, but rather the energy that keeps the human lights on. During a reception at HealtheVoices16 (which I will share in a separate post as it deserves it!), I was introduced to her and joked: “Where were you yesterday when I needed you?”

I was trying to be funny, saying that I was tired and it wasn’t like me to feel like that. And she didn’t laugh, but rather talked to me about “forced recovery” which is what your body does when it’s void of  the mental, physical, emotional, and spiritual energy everyone needs.

I didn’t just listen. I heard and felt what she was saying. At that moment, I understood that if I kept depleting my energy, I was no good to myself, my family, my friends, and my community. The world will continue to spin without me attempting to direct its course.

At an energy break session on Saturday during HealtheVoices, a small group sat with Rhonda for what was supposed to be a quick 15 minute pick-me-up. An hour later (!), I left with words of wisdom from other advocates and Rhonda. My “ah-ha” for this conference was this:

“What would you say to a friend?”

Thunderbolt. And sadness.

What I would say to someone I cared about and what I had been telling myself were two very different things.

My question to you is this:

How do you know it’s time to stop before you get to “forced recovery” and what do YOU do to take time for yourself?

Right now (well, after this post) I’m reviewing my calendar and putting time in for me. And I’m going to stop removing those times that I had scheduled for me in favor of getting something else “more important” done.

I don’t want to stop. But sometimes, as I’ve learned this weekend, you have to stop before you can go.

Easy Flow Chart for High BG Management

In case you need to print it out and show it to someone who might not understand just how incredibly easy it is to manage diabetes on a daily basis. (I can’t even type it without laughing.)

I’m sure I skipped a few key steps in the flow chart.

Easy Flowchart for High BG Management

P.S. This was my day today.

Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

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2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

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I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

Floating…

It’s been quiet around here at the blog, but I’m not being quiet in other places. Lots going on and I’m happy with the way it’s all going… it’s just going at full speed most of the day (and night).

Zero complaints, because truth? I love my life right now. As I texted with Heather Gabel earlier today, the only way I can describe it is: “happily terrified.”

Here’s some things I’m involved with or care about… in no particular order.

The Diabetes UnConference Las Vegas 2016

IMG_6147Crunch time. Registration is still open, but we’ve got a only a few spots left for attendees. To think that in less than 30 days, I’ll be in Las Vegas with some of my most favorite people in the world – and that I’ll get to meet more new favorite people, well… swoon.

These people are my tribe. They believe in peer support and the power it wields. I expect laughter and tears and new inside jokes as well as some old ones (#vegasdust, #claptwice). There’s a lot to do between now and then.

The Diabetes Pre-UnConference Sessions

The Diabetes Collective (the non-profit I founded in 2014) is hosting the Friday, March 11, 2016 Pre-UnConference sessions, which will be free and open to the public. The focus is diabetes, but not necessarily psychosocial – we’ve got Moira McCarthy Stanford sharing her ideas on how to put the fun in fundraising for diabetes research and a session on how not to lose your mind with diabetes. There’s much more; take a look.

If you’re in the area (or road trip!), join us. You can register here.

Diabetes Patient Advocacy Coalition

We held our first DPAC Insiders dialog this week and while I knew what we were planning to do in 2016 in terms of diabetes policy advocacy, talking about it makes me even more excited.

Bennet and I will be doing DPAC Diabetes Advocacy Boot Camps online and in person to assist passionate people in becoming effective advocates for diabetes policy. It’s certainly not the same as raising diabetes awareness or being an advocate for myself.

In fact, if you want to join us in person, you can register for one of two DPAC DABCs: at the Pre-UnConference session or at the CWD Friends for Life Falls Church. (You need to register!)

HealtheVoices 2016

043774-151123_HealtheVoices Application Announcement 1.25.16

This is the HealtheVoices Conference‘s second year and I’m honored to have been chosen to be part of the advisory team this year. For those who are online advocates of ANY health condition, this is an amazing and empowering experience. I learned so much about other health communities and a little about how I view myself as an advocate.

Here’s my recap of the 2015 conference. Worth a gander.

If you are on social media (have a blog, Twitter following, Instagram groupies) talking about a health condition, I encourage you to apply. While I can’t publicly talk about them yet, the keynote speakers and the sessions are going to rock socks off.

This year, it’ll be in the Windy City (a.k.a. Chicago).

The application deadline is February 22, 2016. Don’t wait until the last minute!

Please note: Janssen Global Services paid for my travel expenses for the conference in 2015. I am being compensated for my time and travel expenses in 2016. All thoughts and opinions expressed here are my own. 

Still Pump Breaking

I’m tinkering. Experimenting. The lows are significantly better because I reduced the Tresiba dosage. I’m having issues with the nano pen needle length (insulin is leaking out, despite keeping the needle in long enough for it to do its thing) and I’ve got my pharmacy special ordering syringes with half-unit dosing. I appreciate the DOC for commenting and sharing their thoughts, tips, and suggestions so that I can have an alternative to insulin pumping. You all rock.

And Everything Else

You gotta read this. Biohacking. Whoa.

But as far as I go..

  • There’s stuff percolating with PatientsLikeMe.
  • Still doing interesting things with the Diabetes Advisory Council.
  • I signed up to run my first 5K in May.
  • There’s upcoming trips to DC and Tweet-Ins planned soon.
  • I’m using this to get a lot of writing done (everywhere but on this blog, it seems) to cut down on the noise in my head.

 

And then there’s these goofballs, who keep me grounded…

even when I’m floating.

Selfies with goofballs. It's like dancing with wolves but without dancing. Or wolves. I love these two.
Selfies with goofballs. It’s like dancing with wolves but without dancing. Or wolves. I love these two.

 

Crashing The Diabetes Bike

bicycle-1515716-640x480I’m about five days into my MDI adventure (Tresiba and Novolog flex pens) and well… from the title, you can guess how it’s going.

It’s a little bumpy.

It’s not Tresiba’s fault. Or Novolog’s fault.  The flex pens are amazing (once I learned how to use them!) and throwing them into my purse along with the rest of my gear is simple.

It’s having to learn how to be a person with diabetes all over again in a more “traditional” sense. Not that I was sloppy, but I would casually bolus for meals and figure if I saw a rapid rise, I could dose a teensy bit to bring it back down within range. I would guess at carb counts, figuring I could always adjust later. Adding Invokana to the mix means that my carb ratios and correction ratios are also a little off kilter.

And the math. Oh, the math. I forgot about diabetes word problems:

If Christel’s fasting blood glucose level is 164 because she bottomed out last night and the cortisol is still hanging around in her system and she wants to drink a cup of coffee with half and half now and scarf down an English muffin (double fiber!) with peanut butter before she goes running at the gym an hour later, how much should she bolus?

(If you know the answer, please let me know, because I have yet to solve it correctly.)

I’m pulling packages out of the garbage to get the carb counts. I’m eyeballing fruit. I’m eating more protein because it’s less of a headache. And yet, my CGM graph still looks ugly.

Here’s the rub: One unit of insulin means a lot to my body. It loves it these days. So much so that if I inject one unit to correct a BG outside of my comfort zone, I can send myself into a severe hypo. Which I did this weekend. Flex pens are only for one unit dosing (or two unit dosing). Yes, you can purchase cartridges for a half-dosing device, which I may look into doing next month if this continues.

The second rub: From my years of pumping, I know that my afternoons are when I need less of a basal. Crash. I will be decreasing my basal Tresiba dosage to counteract the crashing. We’ll see.

Why am I doing this?

Normally, when it’s time to eat, I reach down while glancing between my CGM and my meal and bolus. These days, I head off with my phone (mySugr is awesome if you are doing a MDI regimen. Seriously. No better way to track injections and food and times and BGs!) to check my BG by fingerstick, think about what I’m going to be eating, calculating if I still have insulin on board and how many carbs I’ll be eating. Then twist that pen, inject, and dispose of the needle in a sharps container. It’s not 30 seconds…

John asked me why I was really taking a break when we were eating dinner last night.

I think I’m doing this for a few reasons: 1) I really need a break. 2) I need to know if something does go wrong with my pump that I can handle MDI and know what my dosages should be. 3) It’s teaching me to be mindful of what I am eating and doing. It’s teaching me what it means to have diabetes again.

I may explore the amazing Dr. Steve Edleman’s “untethered regimen,” which for me would mean I would continue to take Tresiba (which I do like very much, for when I do get it right…. my BG levels are beautifully stable) and then only put the pump on to bolus. (This would allow me to do those 0.4 correction boluses that I simply can’t do right now with the flex pen.)

I’m still riding the diabetes bike. Crashing is inevitable when you’re learning to ride again.

Words of wisdom, anyone?